Thursday, September 30, 2010

Well I haven't updated on Maggie in a while because I've been so discouraged this past week about her progress, particularly her torticollis. I have been beating myself up lately for not doing her stretching and strengthening exercises more often. But the more I've thought about it, the more I have come to believe (in my own humble opinion) that a normal child would have shown a lot more improvement after six months of intensive therapy like Maggie's had. Which is why I've convinced myself that her torticollis could is probably more related to how she was in the womb with no fluid. (Perhaps her muscle didn't grow properly as she could not move around much? - I mean, it makes sense to me!). I am just praying we get approved to go to Scottish Rite so we can get a better opinion on that. Perhaps she will need surgery sooner than we think. And the Physical Therapist recently mentioned using Botox as well on her neck muscles to help loosen them up (I know it's the opposite of what you'd think Botox would do!)

The truth is, what we are dealing with is not overwhelmingly serious, but we still have to deal with it. And the sheer amount of time needed to devote to her issues is overwhelming to me. On top of that, in the past month we have gotten a new Occupational Therapist, Speech Therapist and Dietitian. It was very frustrating to deal with that because I spent about a month earlier in the summer figuring out our "Fall" schedule - managing school, Maggie's appointments, Mary Lawrence's dance, doctors visits, and so on. But, lo and behold, that was a big waste of time! In addition to her Occupational Therapist leaving Baylor, insurance issues have forced us to find a new Speech therapist.

I had a poor attitude about all this change at first - I mean, I worked so hard to get the perfect therapists for Maggie at the perfect times! But you know what, it all ended up being okay. Having fresh sets of eyes looking at all these issues has really helped. And these new people are truly motivated and excited to help Maggie. Sure I was discouraged when her new Occupational Therapist told me that in addition to the original issue of torticollis, I needed to start thinking about the problems it is causing in other parts of her body. For example, since she can't sit up yet (because of her torticollis and weak muscle tone) she is not learning how to do the pincer grasp (picking up cheerios). Another issue is her eyes muscles - they are going to be very weak on one side since she is always looking to the left and that could affect her vision later on in life (and I had two eye surgeries as a child for similar reasons so that makes her more at risk). I just don't want to think about stuff like that right now!

But at the same time I'm glad she is aware of these things and helping me to stay on top of working with her. She seems to think outside the box, which I like. She is going to help make a special chair for Maggie that will allow her to sit up while hopefully holding up her neck. She also suggested using a simple Ace bandage to hold down her right shoulder so she can more easily look to the right.

The new Speech Therapist (feeding therapist) I found comes to our house, which is nice, and seems really motivated to help Maggie work her way up to eating more solids. And she is going to work more closely with our new dietician at Children's (who I also love!). We met with the dietician on Tuesday and I was very discouraged to hear that Maggie had only gained 4-5 ounces since her surgery. So she increased her daily intake a lot. Which I am happy about it because I've been thinking she needs more for a long time. But now we are battling major projectile vomiting from the increased volume - ugh! So we are trying to balance feeding her at a slow enough rate to avoid spit up, but not too slow where we never have time to sit her up and do her exercises. Ah, if we were only dealing with one issue it would be so much easier...

So that's about all for now. Sorry for the listing of problems - but I also know people have been praying for us and want to know how Bunny is doing. (Yeah I've gotten in the habit of calling her Bunny (like she needs another nickname!). She's just so cute and little like a baby bunny and for some reason I sing "Little Bunny Foo Foo" to her all of the time, which is probably not a good idea since it is kind of a violent song for little babies!

Wednesday, September 29, 2010

You know, for a long time I felt guilty that I really wasn't using my education for anything that useful. I mean, really, I worked so hard all during high school and college to make good grades and pad my resume with all sorts of wonderful experiences. But for what? To play pat-a-cake and dress up for pretend tea-parties? Don't get me wrong, there is nothing more than I wanted than to be a stay at home mom and do those things. I just find it interesting that women are so groomed to be competitive in school and the work force, but are left feeling sort of confused when they encounter motherhood and realize that in all their studies and testing, they did not learn one iota about what it means to run a household or be a mom.

Motherhood is something most women long for, yet feel so under prepared when they get there. Sure, instinct kicks in for a lot of things, but so many things it doesn't. I can't tell you how many of my smart, competitive friends got so frustrated with themselves because they couldn't breastfeed. They felt like failures when it really had nothing to do with their level or determination or commitment. Why is that? We are taught that with most things in life if your work hard enough, you can succeed. But motherhood is not like that. For example, we have been working for so long on getting Mary Lawrence to listen and obey the first time we tell her to do something. Every day is a battle, and every day it just doesn't seem to get any easier. I get screaming tantrums instead of "yes mommy, I'll get in the bath now." And with the feeding thing, I work so hard, yet it never gets any easier or better. I am sure it will, but results are not as immediate as with other things in life.

But having said all that, while school does not help us at all with some of the important responsibilities of being a mother, it has helped me in several ways that remind me that my education was totally worth it. For one, this former history major has used her research skills to aid in finding out more info about all the medical issues plaguing her family, in order to find the right questions to ask her doctor and make sure nothing is falling through the cracks. And I've really had to tap into my persuasive skills when our insurance refuses to pay for certain things.

Another thing is managing our crazy schedules. I finally switched over from my paper day planner to Outlook so everything is also in my phone. (I have even color coded each child and all their appointments). I have taken over responsibility for all our medical billing and insurance stuff. We probably get 5-10 letters a day regarding this stuff- no joke. No one tells you that when you have a sick child that one-fifth of your day will consist of phone calls and bill paying related to this stuff. Yesterday I felt like I was in college again because I went to Starbucks with my huge bag full of folders and stayed for a few hours. But I was not studying for a big exam like the other students. No, I was filing and typing letters and making phone calls all in regards to Maggie's health stuff. I think that doing it while sipping coffee and people watching makes it a little fun actually:).

Furthermore, it sounds so dumb, but I really think being able to carry on an intelligent conversation with all these doctors make them respect you more and really listen to what you are saying. It's like some of them take you more seriously when you say something half-intelligent. Funny because several times I've been asked where I went to school. "Oh that's great," they say when I tell them, "What do you do now?" Umm...you're looking at it...

So all you moms out there that may be feeling that you're education was completely wasted, be encouraged. You are using your education when you don't even know it. I no longer feel embarrassed about saying what I do. Because I am truly using the skills I learned in school to make my family's life better and more enriched. Sure, the baby years are tough. But I look forward to sharing my learned love of art and museums and culture with my children as they get older. I love sharing my love for the library and bookstore (yes, I am a nerd). I hope that my background in history and french will be of some use to them in the future. And I look forward to nightly homework sessions (again, Justin will confirm that I am a dork because I really do like homework).

But having said all of that, in closing this totally waste of time essay on my life, I would suggest that schools bring back 'Home EC.' Maybe it's sexist, I don't know, but I do believe I would have truly benefited from learning how to sew on a button or how to manage bath/dinner/cleanup/children's fussy time all while staying composed and looking pretty like June Cleaver. Those things would really be helpful in my life right now....

Monday, September 20, 2010

Margaret Lee was baptized yesterday. It was such a special day; words cannot describe. Let's just say when the choir opened the service, walking up through the aisles singing "We come, O Christ, to you," the tears came flooding out...

On bed rest I remember pleading with God that we would see this day. I envisioned us standing before our church, telling of God's healing, of His goodness, and His power. I prayed - oh how I prayed - for us to hold our baby in our hands and claim God's covenant to His people with her baptism.

Yesterday the minister who visited me weekly in the hospital and prayed over and for Maggie and me was the one who baptized her. This is the same minister who encouraged us to seek God through it all, to trust Him, and to love Him though our trials. He and his wife lost a baby girl of his own a few years back and God hand-picked them to be part of our lives during our whole ordeal. But God is good. Yesterday, in addition to baptizing Maggie, he also baptized his newly adopted precious son. God is faithful; He is good!

We love you, Bunny...

With Mimi (justin's mom)

Wearing the dress her older sister wore...

You are a child of God, Maggie. It is our prayer that we will be able to raise you and your sister to know that. We strive to bring you up in a family that loves the Lord. Our hope is that we will teach you to walk in His way and to seek Him in all you do. God has truly blessed us in allowing us to be your parents.

Friday, September 17, 2010

It's just a mystery- no weight gain since her surgery. So frustrating because we increased her daily volume and she's now getting everything and not spitting up a lot. I know it seems like we should ignore the dietitians and doctors and just increase her volume by a lot more ( I'd throw in some heavy whipping cream if it's wasn't for her milk allergy!), but we have to be careful about doing that. Too much fluid from too much formula can mean more fluid in her lungs and we can't have that.

It's a fine science figuring out how much she needs, trying to gauge how much energy she is using and figuring out how to make her gain weight at a steady, healthy rate. Hopefully she will start gaining soon and there aren't any other issues we don't know about.

On that note, we are adding one more doctor to the list....her doctor and myself are unsatisfied with the progress of her therapy for her torticollis (what we call "crooked neck"). She's had x rays and the doctor doesn't think she has scolliosis, but now he wants to get a second opinion. Thankfully we have the Scottish Rite hospital here with renowned orthopedic doctors so hopefully she can get in within the next month. Because with her torticollis so bad she will be delayed in sitting up and crawling, etc.because she is off balance. I'm glad we are getting a second opinion because I'm so tired of doing her exercises and stretches all throughout the day and never seeing any results. On top of that, our sweet baby has been so fussy lately and I truly think it's because she's so frustrated and can't do anything but lay there, which she has been doing for 10 months now.

At her post op appointment yesterday they took off all the bandages and we saw the button up close. I almost passed out when she started cleaning all the gunk that had formed around it and pressing her fingers all around it. Now each time we use it, we attach the tube to the button and then take it off when she's finished. Now that it's not taped down she can easily grab the tube if it's in reach- if she yanks it, she will pull the button out. "So you mean she'll just have a hole in her stomach?!" I asked. Yes, she will, she said, and we'll have to put it back in or take her to the ER. I told her I'm not sure I'm cut out for this. You see, having been surrounded by tubes and wires her whole life, Maggie is comforted by them. She can find them so easily, even reaching under her clothes or blanket to find one. So we have to be so careful. I really think I will faint if she does manage to pull it out (which they say is a when, not if). Hopefully I'm not by myself when it happens...

Tuesday, September 7, 2010

The rain came down today in Dallas like is hasn't done in a while. It was so refreshing and a great day to stay inside and cuddle up with my precious girls. I was kind of glad that my babysitter called in sick today. I didn't have to rush around town today trying to catch up on dry cleaning and grocery shopping. My house is a wreck and toys are scattered everywhere, but I don't care. All I have wanted is for our lives to get back to a somewhat normal life and that is what I got today - time just hanging out with my girls . . . making lunch, playing on the floor, and cuddling up to Caps for Sale, Mary Lawrence's new favorite book. It is days like today when I just want to thank God over and over for my children. Nothing gives me greater joy than spending time with them.

Thankfully, Mary Lawrence is back to her normal self and Maggie has not come down with the stomach bug. She is a little sore and cries when you hold her in a way that is uncomfortable to her stomach, but other than that, she is healing great.

Funny thing is that she gulped down her entire bottle the past two mornings, leaving Justin and me chuckling. Really, Maggie, you just had a tube cut into your stomach because you didn't eat and now you decide to eat?!! I'm not really stressing about it because I know she is flaky when it comes to food and tomorrow she probably won't put the bottle to her mouth. Who knows...maybe the stress relief we have all felt with the tube has eased her up a bit. We'll see. I know we made the right decision, though, because of the pure satisfaction that we feel when we are able to pump her full of high calorie formula through the tube. Just knowing that she is going to be a little chubber in a few months brings a smile to my face. And knowing that if she does get sick this winter season, we have this wonderful thing called a g-button to feed her and give her medicines to her.

Sunday, September 5, 2010

Before I had children I could not function unless I had a good 9-10 hours of sleep. No joke. I couldn't hold my eyes open past 10 o'clock and would easily sleep until 7 the next morning. I remember thinking, "how in the world am I going to survive those first few months of motherhood when my baby wakes up all through the night to eat?" Ha! How naive I was to think that the sleep deprivation only lasted a few months! I haven't slept through the night in over a year. But you know what? I am just fine. Tired, yes, but I'm still able to do my job as a mother. Pretty cool how God really does give women the strength we need to take of our children despite our fatigue. Lord knows most men couldn't do what we do for more than a few days! (just kidding, hub).

Speaking of fatigue, right now it's 5 am and I'm laying in Mary lawrence's trundle bed. She's thrown up about 12 times throughout the night so I figured it'd be easier if I just stayed in here with a bowl at my side so maybe, just maybe I won't have to keep changing her sheets. I am so tired but my mind cannot clear enough so I can sleep in between these 25 minute throw-up intervals. Probably because I am making myself sick thinking about what will happen if Maggie gets this stomach virus. It would be really bad and I'm so mad at myself for not washing Maggie's hands yesterday after ML got home from Little Rock and touched her. I'm usually so good about that. Now all I can think about is how I'm going to keep this three year old quarantined in her room tomorrow. And what I am going to do if our poor baby starts vomiting when her little stomach is already hurting so much.

Praying for a quick recovery for my little angel....and for strength to make it through what's looking to be like a long day.

Friday, September 3, 2010

Maggie had a really good night and is now taking full feeds through her tube. Her stomach looks really good and she hasn't had any vomiting (something that happens often with g-tube placement). So we are going home this afternoon! I am so thankful for that everything has gone fairly smoothly and now we just have to watch to make sure the area around her button heals properly and does not get infected.

Thank you to everyone who prayed us through this hospital stay. We are so blessed to have such committed friends and family.

Thursday, September 2, 2010

Maggie is doing much better today. Thank you for praying. Yesterday she was in rough shape. I told my mom that it's different when you are watching your baby in the NICU because they are so small they don't really cry or show much pain. Yesterday was much harder. Maggie looked at me in tears as if to say, Help me!" It just broke our hearts to see her hurting.

The only hiccups we've had is that yesterday the NP was really hesitant to give her morphine because of her lung issues, but I kept insisting that she was in pain and needed more than Tylenol and ibuprofen. (They gave her codeine in the recovery room but the rest of the afternoon was just the Tylenol and ibuprofen.) I'm sorry, I know I am not a doctor, but if I had stomach surgery I think I would need more than over-the-counter meds. The child was screaming all day and the NP kept insisting it was just her waking up from anesthesia. Maybe so, but I know my own child and I have learned to trust my instincts and they were right on this one (with a little encouragement from my doc sis-in-law). By four pm I guess I had harassed them enough that they started giving her morphine every two hours and when the surgeon came in this morning he couldn't believe they didn't give her any all day yesterday. So that was upsetting to say the least. But she's happy now and I'm glad that all our hospital experiences have taught us to really stick up for your child, even if you get push back from the staff. Because in the end we were right - she needed more meds. And she was much happier for it!

Second, and this is kind of funny and tragic at the same time, after we met with the surgeon post operation, we were sent back in to the waiting room until we would be called back to Maggie's room. They said it might take 30 minutes or so. But an hour passed and I got nervous and Justin went and asked the person at the desk what was going on. They called up to recovery who told them Maggie had been awake for 20 minutes screaming. They said they sent someone down but since there wasn't any staff at the desk, they didn't call for us. So we rush up to the recovery room and find Maggie writhing in pain. And to make matters worse, standing over this poor baby was none other than the resident hospital clown , who was making silly faces and singing loudly in an attempt to calm her down. I mean, seriously? You can go find the clown but you can't find her parents who are sitting in the waiting room with baited breath? Oh well. If in a few years Maggie screams horrifically at the sight of a clown, we will all know why...

Besides that, this is a wonderful hospital, I promise. Our hospital expereinces have also taught us that there are incompetent people at every hospital and that they shouldn't take away from the really wonderful and talented people that do work there. We have had great nurses and the NP (nurse practitioner) is much better today. Everything is so extremely organized and coordinated which of course I like. They have these wound ostomy nurses that come teach us how to care for her button and how to feed her. And we are very blessed that God led us to such a respected pediatric surgeon. If anyone ever needs a general surgeon for their child, Dr. Murphy is incredible. I can't tell you how many people have told us how great it is that he was our surgeon.

We are near the Troy Aikman wing where there is a huge playroom with video games and Foosball, and a whole hallway of all this Dallas Cowboy memorabilia. Mary Lawrence would love it all but she's in Little Rock all week with her grandparents. And there are these volunteers (mostly endearing old ladies) who come ask you what your needs are and push around a toy cart and hand out toys and activities to the older children. It's really neat to see what all they have going on here and how they serve the families who are going through difficult times. As much as I have an aversion to hospitals, I am so thankful that they are so wonderful to my child.

I took this video a few hours ago - you can see she is feeling much better. She learned how to wave "Bye Bye" last week so she likes to do it all time. I don't want to be an obnoxious mother who thinks every little thing her child does makes him or her a genius, but I can't help being so proud of her. A milestone so insignificant to most is so huge to us:

Wednesday, September 1, 2010

Maggie's surgery went well- so thank you so much for praying. The only complication was that it took them a long time to get her sedated because they couldn't get the IV in so she has little prick marks all over her hands and arms. (Reminds me of when I was in the hospital and four different nurses and NPs tried to stick me until finally the anesthesiologist had to be paged to do it). Other than that, the button was placed and her lungs did great so that's an answered prayer.

However, she has been in more post-op pain than I thought she would be. I thouggt they would give her a lot of pain meds to keep her comfortable but she's definitely not comfortable and they don't want to give her any more morphine cause of her CLD, I think because it can cause respiratory distress. But it's been really hard to watch her suffer and I haven't been able to comfort her very well.

We will probably be here 2-3 days depending on how well she heals. We also will have some education on how to care for her button and wound; it takes about 8 weeks to heal completely.

Poor little baby is so sweet just laying here in her hospital bed, waking herself up every few minutes to cry or moan. I just can't wait to take her home....

About Me

Musings on Hope was started in 2009 when I was put on bed rest for a very serious pregnancy condition called PPROM. At 14 weeks gestation my water "broke" and I lost all amniotic fluid. We were told that only a miracle could save our baby because without any amniotic fluid our daughter would not develop lungs, and even if she did survive, she would be severely disabled.

Doctors recommneded we terminate the pregnancy, but we refused. Instead my husband and I spent the next 15 weeks praying fervently for miraculous healing. Maggie was born at 29 weeks and miraculously survived. Our journey has been long and arduous, but nearly four years later we are continually amazed at what God has done in our lives, particulary in Maggie's. This blog has chronicled our journey through hospitals, specialists, therapists, and many unknowns. Trying to navigate these waters while still trying to provide a joyful and meaningful for my young children has been my goal all along.